사회적 자본과 장애아 어머니의 삶의 질

The Social Capital and the Quality of Life of a Mother Who Has a Child with Disabilities: A Case Study of Social Networks

장애를 가진 사람들은 시혜를 받아야만 하는 수동적 존재가 아니고 스스로 자신의 삶을 재구성해갈 수 있는 능력을 소유한 능동적 존재이다. 이러한 관점은 장애를 가진 사람과 환경 사이에서 벌어지는 상호작용을 의미하는 것으로써 장애를 가진 사람이 소유하고 있는 사회적 자본의 양과 밀접한 관계가 있다. 사람들은 사회적 연결망 내에 자리 매겨져 있는 자원들을 활성화시킴으로서 자신의 원하는 어떤 결과, 즉 각종 정보, 정서적 지지, 사회적 승인 등 모든 영역에 걸친 다양한 사회적 지지를 제공받을 수 있기 때문이다. 장애 아동의 어머니들을 대상으로 하여 삶을 능동적으로 재구성해 나가기 위한 에너지로써의 사회적 자본에 대한 분석을 시도한 결과, 사회적 연결망의 범위는 매우 작았으며 같은 속성을 가진 사람들과의 유유상종에 의한 폐쇄적 연결망 구조 속에서 정서적, 도구적, 정보적 지지를 받고 있는 것으로 나타났다. 그러나 이러한 폐쇄적 연결망 속에서의 사회적 자본은 공동체를 함께 몰락시킬 수 있으며, 공동체의 연대와 개인의 자유 사이에 딜레마가 존재하고 외부와 단절되며 하향 평준화의 위험이 있다는 것을 인식하여야 한다. 결국 비장애인이나 사회로부터의 배제와 편견이 강하면 강할수록 장애인이나 가족들은 유유상종에 의한 연결망 속의 사회적 자본을 더욱 활용할 것이므로 장애인이나 비장애인 모두는 더불어 사는 사회를 만들어 나가는데 주력해야 할 것이다.

This study was done to explore what kinds of social capital a mother who has a child with disabilities can use in social networks and what mechanisms are operating on her coping process as a positive actor in her own life. The participants were 5 mothers whose children have Autism and 4 mothers whose children have Cerebral palsy. Data were gathered through in-depth personal interviews, focusing on the mothers’ social networks, social capital, and their subjective feelings about their lives. Each interview took 1-2 hours. This study found the followings: First, The mothers who have children with disabilities were gradually getting isolated from society because of social stigma. The amount of social relations between the mothers and neighbors, friends, even close relatives like brothers and sisters, and parents and parents-in-law was a very small aspect in the structure of social networks. But these mothers were in new social networks among other mothers who were experiencing the same problems. It showed restricted relations reflected in solidarity expressed in the feeling of ‘we-ness’. This type of social network can be called ‘Homophily’. Second, Though husbands, parents and brothers/sisters were located close to mothers in the structure of social networks, they gave just a little support. Sometimes they acted as the causal factors to give conflict or stress to mothers. Most of the mothers were given emotional, informational, material support from the other mothers in the same situation. Third, The mothers who have children with disabilities have little social capital according to the structural and functional characteristics of social networks. Though the amount of social capital which mothers have is limited, mothers were using different types of social capital, like ‘Value introjection’, ‘Reciprocity exchanges’, ‘Bounded solidarity’, and ‘Enforceable trust’ in the close networks called homogeneity. Value introjection is a first source of social capital and prompts individuals to behave in ways other than demonstrating naked greed. Social capital arising from Reciprocity exchanges consists of the accumulation of previous good deeds done for others. Bounded solidarity focuses on situational circumstances that can lead to the emergence of principled group-oriented behavior. If there is sufficient suffering, this emergent sentiment will lead to the observance of norms of mutual support. Enforceable trust focuses on particularistic rewards and sanctions linked to group membership. Fourth, The mothers’ subject evaluation about their lives appeared to be different. Some mothers are still suffering from sadness or depression linked with their children’s disabilities, the others expressed that their lives became rich. So It can be stated that how much social capital a mother holds has some relation to success in the process of rebuilding their lives. Because richness of social capital in social networks can encourage the mothers to make their lives more positive and active.